Contact Rare Lung Disease Program

Children of all ages receive advanced, family-centered care from pediatric pulmonologists in the Rare Lung Disease Program at Riley at IU Health. We partner with your child’s primary care doctor to provide comprehensive care for rare, complex lung conditions and abnormalities, immune system disorders and genetic lung conditions such as primary ciliary dyskinesia.

Depending on your child’s condition, care team members may include doctors from specialties such as pulmonology, ear, nose and throat, gastroenterology and radiology as well as dedicated specially trained nurses, social workers and pharmacists.

At your first appointment, our nurse coordinator will speak with you about concerns that you have with your child’s breathing. The nurse will ask about your child’s symptoms and any family history of breathing problems. You will then meet with one of our pulmonologists, who will review your child’s history and symptoms. The pulmonologist will also examine your child and may order diagnostic procedures. These may include bronchoscopy, pulmonary function testing and imaging tests such as X-ray and computed tomography (CT).

Nasal nitric oxide collection, which measures exhaled nitric oxide, and ciliary biopsy collection, which examines cilia specimens from the nasal passages, is also available. Both of these tests are used to diagnose primary ciliary dyskinesia.

After reviewing your child’s medical history and physical exam and diagnostic test results, the pulmonologist and care team will recommend a treatment plan that meets your child’s specific needs, which includes daily management and follow-up care with the pulmonologist. Expert care for your child is assured with access to the resources of Riley at IU Health.

Conditions & Services

Conditions Treated

Our pediatric specialists provide patient- and family-centered care for most related conditions. The links below provide more specific information about some, but not all, of the conditions that we treat.

Services Offered

We offer a number of different Rare Lung Disease Program services. Below are some, but not all, of the services that we provide. If you have a question about a specific service that is not listed here, please contact our program.

Riley Outpatient Center at IU Health

Program Forms & Resources

Program Forms & Resources

The Rare Lung Disease Program at Riley at IU Health provides the following forms for parents, healthcare providers and personnel. We have also curated relevant resources from other websites and provided links with brief descriptions of the information that is available.

Related Departments

Related Departments

Health Professionals

For Health Professionals

Pediatric pulmonologists at Riley at IU Health partner with
you to provide advanced diagnosis and treatment for your patients. You can
refer a patient and learn about our pulmonary research and education programs.

Refer A Patient

Riley at IU Health works with referring physicians in Indiana and beyond.

Research

Education

As faculty members of the Indiana University School of Medicine,
we help train the next generation of pediatric pulmonologists. Our Pediatric
Pulmonology Fellowship Program provides post-residency training in an
atmosphere of mentorship and collaboration.